It definitely was a miracle! I’ve had one rupture but I haven’t had treatment. I’ve been reading some older threads on here and it’s really sad how much healthcare in the US has changed. I know that the way it used to be and it’s so much different now. I’m not sure if it’s just the state I live in, or if the false accusations when I was admitted for the rupture, or possibly a combination of the two, but I’ve seen two neurologists and a neurosurgeon and no one seems to think it’s important to do any type of treatment. The last neurologist did speak with me about the gamma knife, but when I went in for my follow up he simply gave me a prescription for headaches (which I do have a history of migraines, but I’ve tried telling them that the headaches I have now are not migraines). It’s just so frustrating! And I don’t have anyone to help me, and I was told that the part of my brain that was damaged most is the part that helps in decision making. Thank you for sharing your story! You are truly a miracle!! I wish you all the best!! 
I also don’t know exactly when I had the rupture. I know I had the leg issues for a couple of weeks, as I mentioned before, and the general weird feeling. But I wasn’t hospitalized until I was no longer able to walk. I’m curious if most people know exactly when their rupture happened…? I was reading older threads about how hospitals in the US will see you/monitor you even if you don’t have insurance, but it’s not like that now. At least not in the state I live in. I went to one hospital and was treated for dehydration and sent home, told to follow up with my primary care doctor, and I did the very next morning. She gave me medication for vertigo & sent me on my way. I was already beginning to have a lot of trouble walking, and my dad and I told her how I had fallen and how I wasn’t able to find her office for half an hour (though she’s a mile away and I’d been to her countless times over the years). That night I couldn’t take more than two steps without my legs totally seizing and me falling, so I went to another hospital and the nurse said she was going to order a scan and said she could lose her job for it?!? Anyway, in short, they didn’t do the proper scans and falsely accused me of overdosing on a medication I had been prescribed for 10+ years, and noted in my record that I wasn’t prescribed it! So they were all more focused on getting me into drug rehab (which was later determined totally unnecessary) and I feel that because of that they didn’t take the AVM seriously. Although it was proven that I had not overdosed and didn’t need drug rehab, I never had the false information removed from my medical record (which I need to do, but I need help getting it done), and I feel that because of all that none of the doctors I’ve seen take me or my condition seriously. Thank you for your comment. Praise God you’re still here and I wish you all the best!!
no prior warning really - first time i had a small head ache in the evening, just got worse and worse until vision was going nuts, hyperventilation and had to go to hospital after about 3 hours or so. That was a minor bleed. The other 2, was just instant - feeling fine, then “whack!”.
I was only 9 when I had my AVM bleed so what is know is from what I was told by others I was kept in an unconscious state for almost a year in 1985 today I’m 41 and I have seizure’s but I owe my life to my Neurosurgeon at Kaiser Panorama City, California. My mother called and wrote over a hundred Neurologists around the world and 99% said I wouldn’t live to see my tenth birthday all it took was one man who had one successful surgery at the time to take a chance on me. I was also lucky that my father had awesome insurance through work at Ralph’s Grocery. Anything is possible these days.
So sorry to hear about the troubles, but I would like to encourage you to take the driver’s seat. My AVM was discovered accidentally during a CT scan after I banged my head. The radiologist referred to it as a vascular anomaly, and the E.R. Doc suggested I see a Neurologist who confirmed what it was and referred me to a Neurosurgeon. We monitored it, but ended up having to respect it on an emergency basis. The Doctors should be the ones explaining the need for whatever should be done to insurance, but I encourage you to continue following up with your doctor who can help you make the best decision given your circumstances. All the best!
Thank you for sharing your story and your encouragement and advice! I really feel that I need to get established with a doctor in a bigger city. I am trying to get in with Vanderbilt. I don’t think that the doctors here really understand this, like they probably heard about it in school but haven’t ever seen patients with AVM’s. I have been feeling really strange recently and I can only remember feeling this way just before I was hospitalized before when I had the rupture. I am trying to get everything in order so that I can hopefully go to Vanderbilt or some other hospital in Nashville if I do in fact need to go back to ththe emergency room with this. I’m afraid I might have a small bleed already, and I’m trying to do whatever I can before I’m unable to make decisions on my own. I plan on spending my day getting things in order and writing it all down so that if I do have to go on an emergency basis, my husband will know what to do. If I don’t have to go to the emergency room, I will hopefully at least be able to get established with a good neurologist in Nashville, someone who has hopefully seen this before or is at least more knowledgeable about it. I read that “teaching hospitals” are best for this sort of thing because they are more likely to do tests that other hospitals may not do right away. I think this is the best decision for me right now. I just wish I’d started on this before I began having symptoms like I am now. I think I just wanted to ignore it and it was easier for me to pretend that everything was okay, but now my vision has become impaired like it only has when I had the first bleed, and I’m having many other symptoms that I have only had when I had the initial bleed. Thank you again for sharing your story. I wish you all the best! Much love to all my AVM brothers and sisters! I think of you all often though I don’t come on here much. I’ve been just wanting to push it all to the back of my head and hope that things would just start to feel normal again. But now I am afraid I’ve waited too long, so I’m trying to act fast and be prepared to go to the hospital today if needed. Thank you again for your comment. I truly appreciate each and every one of you!! I feel like, even though I haven’t been active on here, that you all can understand me more than most. Thank you all for caring, for sharing, and for being here and supporting me. I don’t remember every name, but each of you hold a special place in my heart. I will keep each of you in my thoughts and prayers! I will try to remember to come back before long and let you all know what’s going on with me, and if anyone wants to reach out feel free to do so. Sending my love and good vibes to all of you today!
I think I am going to look into this and see if the statute of limitations has already gone by. I don’t think they did this intentionally, but they did have the opportunity to say “I was wrong”, but no doctor wants to do that. It’s easier I suppose to try and lie and pretend that the patient is in the wrong even once you realize they weren’t? I am going to try to upload that picture and see if you guys can see what I was referring to about the date on the test. I’m very interested to see what others think about this. Sending love to each of you!
Please tell me if you can notice anything that stands out here, and if so please tell me what it is you notice? Sorry, I don’t mean to be any trouble to anyone!! It would be very helpful to know what other people see. I’ve gotten a few opinions, but I don’t think they were totally unbiased other than one, but many people just don’t even know what they are looking at or for. I don’t want to say what you’re “looking for”, because I want to know if you can see it without having any ideas pre-planted in your head. I would appreciate any feedback! Much love to each and every one of you!
Well the image isn’t really opening for me on my phone (even tried downloading it) but if I could I would try and see and give you my input on it
You’re near Huntsville, right? I have a friend who is an anesthesiologist there. I could get you a referral to a neuro dr if you want.
Kalama there are many great Neurologists out there many not even in the U.S. but are willing to come to further the knowledge of it all there was a doctor in Ireland who was successful with a baby and mine was from Germany. So I would say widen your search many will come to you.